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Talking with Sarah Gordon

As a teenager, Sarah Gordon was told not to return to her studies and that she would never be able to live on her own. Now she has a PhD, a husband and two children.

The New Zealander is currently helping the police shift their thinking around people in crisis, and she dreams of a day when her university will have a school dedicated to lived experience-based research. But bringing other professionals “out,” researchers or otherwise, remains a challenge. “I think the fact that it is most difficult for mental health professionals to disclose is incredibly sad, because it reflects the stigma and discrimination that exists within the system,” Sarah says.

You can also read her guest post this week at sister site Attemptsurvivors.com.

Who are you? Please introduce yourself.

My name is Sarah Gordon. I have personal experience of mental distress. I was first
diagnosed when I was 17, and I was put in a mental health hospital at the time. I was there six months before I was discharged back into the care of my family, with the advice that a return to university would not be wise and that independent living would not be an option for me.

As it turned out, my parents were not compliant with that advice, and they facilitated and
paid for mental health support to enable me to go back to university. At the beginning, it was on a very part-time basis, so I did one paper per semester, and I required about 15 hours of mental health support per week to enable me to do it. As you can appreciate at that time, it was not the best cost-benefit investment.

But as it turned out, over a number of years I managed to complete a bachelor of science, which I majored in psychology, a law degree, which I majored in health law, a masters of bioethics and health law and a PhD in psychological medicine. But more important than any of that, I don’t live independently, I live with my husband and two children. And now I work for the department of psychological medicine, University of Otago in Wellington, New Zealand. My job is what I describe as a “service academic.” I use my personal experience of mental illness to inform all the research and teaching undertaken by our department.

How did you come to be talking with me?

For a number of years after I was diagnosed, I was very secretive about my experience and didn’t disclose very much at all. In 1998, I happened to get a job as a consumer adviser to a mental health service. It was very clear when I went for that job that my personal experience with mental illness was a qualification to do the job. And yet, I didn’t fully appreciate what that meant. Essentially, everyone I came in contact with knew that I had personal experience, purely as a result of my position title. At the beginning, I found that very difficult, because I felt that people responded to me in a way that was quite different to those situations where people didn’t know. But I came to see overcoming that stigma and discrimination as a real challenge and one that I actually ended up enjoying. And my work since then has always involved me using my experience in my work. And so that’s maybe how you became aware of me.

What is the lived experience community like there? Is there an attempt survivor community at all?

Since I’ve been involved, I’ve felt that New Zealand has always has quite a strong lived experience community. However, the extent of our influence and the opportunities for influence have varied since I’ve been involved. And I would say that in the last few years
there have been a number of changes in mental health policy at the national level that have
meant that we have less influence than we may have had some years ago.

How did that happen?

I think there were a couple of things. One is that the government dropped mental health as a health priority. And the second was that our mental health commission was dis-established.

That seems unusual. Was it a budget problem?

Well, that’s happened since the economic crisis, and it also coincided with a change of
government here in New Zealand. But it’s certainly unusual compared with a number of
countries in other parts of the world where mental health has become a priority and mental
health commissions have been established. I think New Zealand was seen as leading the way in many respects prior to this, and now I certainly wouldn’t consider us to be in that same position.

How have reactions to your experiences changed over the years?

Well, I find it quite interesting now that I don’t feel like I experience stigma and discrimination as a result of my experience. That might be partly due to the fact that even if I did, I wouldn’t take any notice of it. But what I find more is that people tend to respond to my experience by somehow feeling like they’re able to share with me on a different level. So a lot of people will speak to me, even if we don’t know each other that well, about their own difficulties and struggles in life. And I think somehow with me being so open about my
experience, people then feel safe to expose and share their difficulties and struggles, often, I believe, with a great sense of relief.

Do you like that? Or do you get too much of it?

No, I find it all right. I mean, in some situations it’s quite funny. The last one I had was just last week. I went to an appointment and he ended up telling me about lots of his family
history and how he had had a major operation last year and the struggles he’s dealing with as a result of that. After about half an hour, he sat back with a bemused look on his face and said, “I don’t know why I just shared all this information with you! Normally when patients come to see me, I don’t talk about myself the whole time!” You could see him trying to figure out what it was, my face, my qualifications, and I said, “No, it’s mental illness.”

Did he know what you were talking about?

No, he looked even more bemused.

Being so open and public, do you ever feel like you have to hide a bad day?

No. I never do.

What would you like to change about the mental health care system?

I think we focus too much on trying to using medications to cure people. And I think, you
know, we don’t necessarily have or take the time to support people as they need to be
supported. I think, if someone’s attempted suicide, then there’s an amount of emotional
distress there, and it takes support that involves a lot of time and effort for the person to get through that. And I think ultimately it needs to be focused on social roles and relationships. And we just don’t do that.

How are people treated now?

If a person is at risk to themselves, they will be physically protected until that’s no longer felt to be required. And I use “protected” very loosely because often that protection involves
compulsory treatment, seclusion, those sorts of things. And in most cases, medication will be the first and often the focus of the treatment.

What would the ideal treatment look like?

As I say, I think a person who’s suicidal or has attempted is suffering, to my mind, extreme
emotional distress and very often is very disconnected from most things in their life that are very important. And so our supports need to be focused around supporting the person until whatever is distressing them can be resolved. Support to reconnect is imperative, particularly in terms of those relationships that are important to the person.

What arguments have you had to make in your career to prove that you could do what you were pursuing?

I think relationships are an incredibly powerful thing. And I have found that generally in my
work, if people are opposed or hesitant about working with me for whatever reason, that if I
persevere and develop a relationship with the person, generally we get to a situation where
that person comes to appreciate and recognize the value lived experience can bring. And as a result, some people have been really quite staunch supporters of both my involvement and the involvement of others who come from a personal experience perspective.

How to make suicidal thinking a less scary topic overall?

I think it’s important that we talk about it more, particularly as we wish to support others in
distress. I think one of the reasons that talking about it is not common is because of the
perception that by doing so, it could lead to more tragedy. However, I think that if we’re
aware of how to do it in a way that does not increase risk, that ultimately is going to benefit
everyone.

Is this something the media should take on?

I think absolutely the media needs to be involved. Tell the stories that people can get through it and people can recover. Those are the most important stories that we need to get out there.

What are you working on now, and what would you most like to accomplish?

For the moment, the main thing I’m working on is the development of a training package for the police, specifically around how they respond to people who are experiencing mental
distress, and obviously that includes people who are suicidal. And the particular approach
we’re taking is that we’re moving away from their education being presented in a way that
pathologizes the distress and more toward supporting the police to learn about what might be going on for people when they’re experiencing this type of distress, and the approaches that can be most supportive in those situations. That’s exciting.

Going forward, my dream is for our university to have a school dedicated to lived experience-based research, where we can start building a really significant and substantial amount of knowledge that is informed by people’s own experiences of both distress and recovery.

In the police project, what have been some of the more striking questions or observations?

We’re very much at the beginning of this work. The police of New Zealand have set up and
invested in a major project to improve how they respond to people who experience mental
distress. I have to say that the people leading that project from the police have been incredibly receptive to what we are proposing from a service user perspective.

Very often, people who work from a personal experience base in academia are sole voices
within departments, schools, institutions, and it is vitally important that we have both
a professional and a personal support network. Hence, I established the International
Association, a Mendeley-based e-network, in 2012 to enable service user academics and their supporters to engage in topical discussion, share experiences, enhance collaboration, keep abreast of advancements and exchange information.

In general, how do we get others to disclose their experiences, since they’re all around us but silent?

I think the fact that it is most difficult for mental health professionals to disclose is incredibly sad, because it reflects the stigma and discrimination that exists within the system. I suppose the only thing that’s going to change that is more people disclosing, and actually requiring the system and attitudes and beliefs to change as a result of that.

Are you happy with where you’ve come to in life?

Yes, like anyone, I experience up and downs, but I’m quite comfortable with what I do and
how I do it and where I’m at.

What made your parents so stubborn and “not compliant” after hearing that you would have no more education or independence?

I’m not sure. Their belief in what I was, and capable of, never wavered. Even in my work
now, I spend a lot of time talking and writing about the concept of recovery, and when I look
at it now, the way my parents supported me was fully consistent with what a recovery
approach to mental illness is, without them even knowing it.

What does your family think about all of this?

I think they’re very proud of where I’ve got to. Obviously, they’re intimately aware of what I
needed to overcome to get to this place.

Finally, who else are you?

Well, a big part of my identity is as a mother of two boys. I have a 14-year-old son and a 10-year-old son. And so a significant part of my life involves being a mother to them. And
another significant part of my life is as a wife. I’m also heavily involved in our community in
a variety of different organizations and associations. So life is pretty full. And that’s good.